Living with half a heart can mean you face many different challenges. One of which is not having as much energy as your friends. This is because your body finds it harder to produce the energy it needs to do simple day to day activities.
Youth Zone – Energy
Energy with half a heart
How is energy made?
Energy is made in every cell of the body from the oxygen, food and water transported in the blood and pumped around the body by the heart.
What’s different if I have half a working heart?
Children and Young people with a single ventricle heart (half a working heart) have less energy than their peers because they may have less oxygen in their blood and only have one of the two pumps needed to drive blood around to every cell. Doctors who have researched this say that most heart healthy teenagers run at 100% energy level at rest and are able to increase that to 500% on activity. Young people with half a heart run on a normal energy level of between 50% and 75% which can only rise to 200% when active.
Every activity in a day takes up energy, walking, talking even digesting food. It also takes a huge amount of energy to concentrate and remember information or instructions.
“A normal person starts their day with 20 spoons of energy, just what they need for the day ahead. Throughout the day everybody loses spoons, as they do activities like walking to school, and gain spoons, for example when they take a rest or eat. However, people with heart conditions, like me, start each day with 10 spoons.” Lucy (13).
How can I manage my energy?
To help you understand your energy levels in an easier way, Little Hearts Matter have introduced The energy project with spoons. This is a great tool for you to plan your day and make sure you have enough energy to complete activities like going out with your friends or completing homework. It helps you balance your day to day life and get as much out of it as possible. It is also a useful way to explain to your friends, teachers and parents how and why you get more out of breath or tired.
Using the spoon theory, Little Hearts Matter and our youth members produced and starred in a film explaining what having half a heart can do to their energy levels. You can see this film, our poster and more information below.
The Energy Project with Spoons
Have you ever wondered how you have the energy to do everything during the day? Do you ever feel like you get more tired and out of breath than your friends?
The sciency bit!
If you have half a heart it means your body will struggle to provide you with the amount of energy a person with a full working heart has. This is because your heart can’t pump as much blood around the body to deliver oxygen to your brain, heart, kidneys and liver as fast as other young people, therefore you might face some energy challenges that others may not. Energy is something you will use throughout the day and it enables you to do all the simple things like brushing your teeth or walking up and down the stairs. But energy also allows you to do the things you enjoy, so you have to make sure you have enough energy to do all of these things throughout the day. Balance is key.
The energy project with spoons is a way for you to make these challenges a little easier. Below some of our youth members worked with Little Hearts Matter to create the film below to try and explain having half a heart and half the energy. Click play below to watch this.
The Energy project with spoons is Little Hearts Matter’s adaptation of The Spoon Theory which was created by Christine Miserandino. Christine suffers from a disability called Lupus. She decided there needed to be a new way for her to explain her lack of energy to other people. She found that people could be unable to relate to her because her disability restricts her more than others but it may be difficult to understand why. She found that using spoons to represent energy was the easiest way to get other people to understand.
It is normal for your energy to decrease during the day so people can understand that, whats harder to understand is that children and young people with half a heart use up a lot more energy when doing the same day to day activity. Therefore, people who have a condition, like single ventricle heart disease, do not have the luxury of deciding what activities they would like to do as they have to be aware of how many spoons of energy they have left. The energy project with spoons can create a way for you to think about the day and how best to use their energy. Finding balance and adapting to a half a heart lifestyle can be one of the many challenges you face.
So if you have half a heart, how do you use the Energy Project with Spoons?
Youth member Lucy aged 13 explains how to use the energy project by saying, ‘ A heart healthy person starts their day with 20 spoons of energy, just what they need for the day ahead. Throughout the day everybody loses spoons, as they do activities like walking to school, and gains spoons, for example when they take a rest or eat. However, people with heart conditions, like me, start each day with 10 spoons.’
These are the spoons of energy that you can use throughout your day. From these 10 spoons of energy you will need to think about what activities you would like to do and how many spoons of energy it will take up. To help plan your day we have created a LHM Energy Project poster with some common activities and how many spoons they use.
Little Hearts Matter have created this handy poster to help you figure out how many spoons you use on certain daily activities.
You can try to prevent your energy levels from dropping to 0 but how?
Eating a healthy, balanced meal can help replenish some energy. So making sure you have a good breakfast and eating in regular intervals throughout the day is very important. Doing this may help at some points in the day but may not be enough for you to complete all the activities you would like during the day. The best way to tackle this is by using the energy project to plan your day and ensure you can save some energy to do the things you want to do the most.
This Energy Project isn’t just for people with half a heart to plan their day, but it is also used to explain to others about how your energy levels might be different to heart healthy people. If you don’t feel like your teacher understands why you are out of breath, or why you can’t concentrate, you can use the spoons to demonstrate why and how they can help. You could even get them a copy of the poster and film if you think this could help!
Towards the end of the day you may feel like you have no spoons of energy left, if this is the case your body may borrow some of your spoons of energy from the next day; this will help at the time but remember this means you will start the next day with fewer spoons. If this is the case make sure you plan your day with the new amount of spoons you wake up with.
Each day will be bring up different challenges and sometimes you will have more energy than the day before but this tool can make sure you, your parents and teachers have a better understanding of your energy levels and why you may get more tired than others.